You passed me in the shopping mall... (You read my faded tee) You tapped me on the shoulder... Then asked..."What's a CHD?"
I could quote terminology... There's stats that I could give... But I would rather share with you... A mother's perspective.
What is it like to have a child with a CHD?
It’s Lasix,aspirin,Captopril… It’s wondering…Lord what’s your will?… It’s monitors and oxygen tanks… It’s a constant reminder to always give thanks…
It’s feeding tubes, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held him…(I’d waited so long) It’s knowing that I need to help him grow strong…
It’s making a hospital home for awhile… It’s seeing my reward in every smile. It’s checking his sats as the feeding pump’s beeping… It’s knowing that there is just no time for sleeping…
It’s caths, x-rays and boo boos to kiss… It’s normalcy I sometimes miss… It’s asking do his nails look blue? It’s cringing inside at what he’s been through.
It’s dozens of calls to his pediatrician… (She knows me by name…I’m a mom on a mission) It’s winters homebound…and hand sanitizer… It’s knowing this journey has made me much wiser.
It’s watching him sleeping… his breathing is steady… It’s surgery day and I’ll never be ready. It’s handing him over…( I’m still not prepared…)
It’s knowing that his heart must be repaired… It’s waiting for news on that long stressful day… It’s …praying…it’s hoping…that he’ll be okay. It’s the wonderful friends with whom I’ve connected…
It’s the bond that we share…it was so unexpected… It’s that long faded scar down my child’s small chest… It’s touching it gently and knowing we’re blessed… It’s watching him chasing a small butterfly…
It’s the moment I realized I’ve stopped asking why? It’s the snowflakes that fall on a cold winter’s day… (They remind me of those who aren’t with us today) It’s a brave little boy who loved Thomas the train…
Or a special heart bear…or a frog in the rain…. It’s the need to remember we’re all in this plight…. It’s their lives that remind us we still need to fight! It’s in pushing ahead amidst every sorrow… It is finding the strength to have hope for tomorrow
I kept forgetting to post this video, but here is Drew the day after surgery blowing raspberries at Grandma Lorie. This was taken maybe 2 hrs after his vent was pulled. Strong little man!
This is me. I am a wife to a hardworking and very loving man and a work at home Mom to the most beautiful little boys in the world, as well as one crazy furbaby. I am also a CHD advocate, a Senior Director at Thirty-One Gifts, a boot camp-a-holic and trying to become crafty in my old age. This blog is where I come to talk about our journey with CHD, my children, family and the things that interest me - as well as my struggles. Thanks for stopping by!
My Love
This is my husband! We've been married for almost 5 years and I still don't know how he puts up with me! ;) By day, he's a hardworking chemical engineer and by night and weekend, a hands on Daddy and wonderful husband. He is truly the greatest man I know - selfless, loving and always putting the boys and me first.
My Heart
Here is my heart personified!
Drew is our CHD warrior, having undergone open heart surgery at 9 months of age to correct two CHDs, Pulmonary Stenosis and Atrial Septal Defect. He has an affection for cars (especially Lightning McQueen), airplanes, the park, ice cream, scooters, Mickey Mouse Clubhouse and Jake and the Neverland Pirates. He loves to sing and dance, and roughouse just like a boy should. He is a funny, funny little boy and I am so grateful to him for helping me become a mother.
Emmett is our newest blessing. A sweet little cherub sent to us from God, who knows just what He is doing. God knew we needed a little one just like E and I am so thankful to be his mother. He is just starting to really explore his world and being witness to that is truly a privilege.
2 comments:
Too cute!
I was thinking the exact same thing -- too cute!!!!!
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